Song of the Post: “Somewhere A Clock is Ticking” by Snow Patrol
Since this is completely a different subject then my post on Thursday, I figured I would break it off into another post.
I guess the second downer this week came on Monday morning. I had a checkup with the NP at my doctors office about my Tysabri treatments. For those of you who know little about Tysabri the major (and most discussed) possible side effect of the treatment is getting a brain infection usually referred to as PML. There is no cure for this brain infection and it has caused deaths in about 20% of those who got PML while on Tysabri. During the appointment she did inform me that the number of people who are on Tysabri and have gotten this brain infection has increased which means my chances of getting PML after a year or two of exposure has increased as well.
Well, before we get to ahead of ourselves let’s go back a little further to October 2010. On Sunday, October 17th I finished my first marathon. Approximately a week and half later I had my third relapse in a year. I had been taking Copaxone for about 13 months at that point so obviously my doctor was not happy to see my MRI’s or to hear about another relapse when I had a checkup with him at the beginning of November. He informed me at that point that he was going to take me off of Copaxone as it appeared I was one of the unlucky few that it did not work for. Since my MS was still progressing too much he wanted to put me on either Tysabri or the brand new drug Gilenya. It was obvious by the way he and the NP talked that they wanted me to go on Tysabri and not Gilenya but the big side effect of possibly dying does make one take a pause. I first took the rest of the day off. I was suppose to go into work after my morning appointment but figured the almost non-stop crying and just staring off into space would not help me or others be productive at work.
I went over my options for the next few weeks and of course when I made a decision to go on Tysabri I found out that I had the JC virus which increases your chance of getting PML. They recently came out with a blood test to help determine if you have the JC virus and I came up positive. Of course that pushed off my final decision another week but I still ended up deciding to take Tysabri as Gilenya had only been on the market for about a month. It was not an easy decision for me to make, eventually all I could go with is that Tysabri has been around longer and even though it can cause PML they knew a lot more about it. There isn’t many surprises with Tysabri and who knows if Gilenya could be as deadly or have other complications after few years of exposure. The test trials only lasted two years.
In about two weeks I will be going to the infusion clinic for my 7th infusion of Tysabri. Yeah, it is nice not having to give myself a painful shot once a day but driving a hour one way every four weeks and having to sit still for two hours and missing a half day of work isn’t the greatest feeling either. When I made the decision to go on Tysabri in December I agreed to only go on it for a year. The past few months I had started to waiver on that as I was not sure I would want to go on Gilenya. Now after Monday’s appointment I feel I’m back between a rock and a hard place. I am definitely leaning back towards not wanting to stay on Tysabri for more than a year after hearing the new statistics for people getting PML while on Tysabri. However, on the plus side I have heard I may have some more options when I hit my year anniversary with Tysabri as there are many new drugs up for FDA approval. I plan on doing everything I can to stop or at least decrease the progression of my MS but how far do you take it before the risk outweighs the reward?